Squamous Cell Cancer of head and neck

Posted by carolynswebb @carolynswebb, Feb 7, 2017

Does anyone know of a treatment for squamous cell cancer stage IV? My son is 47 and was given weeks to live but he is still active and now outlived the weeks by months. His treatments have stopped as the oncologists said they have given him radiation and 3 different forms of chemotherapy including immunotherapy.

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@calenbd

I was diagnosed with stage 3 SCC last January. It ended up being sourced in the base of my tongue and had spread to my right neck lymph node. It ended up being more than 6 weeks before I was able to start treatments (first induction chemotherapy followed by radiation and chemotherapy). I completed my treatments in early September. My CT scan of my neck and tongue was clear. I’m awaiting a PET scan in December that I am confident will also be clear of cancer. I don’t believe the 6 weeks delay should be cause for additional stress. I will say that the treatment side effects were not easy, but one can make it through with support from loved ones and the knowledge that it is doing its job in saving your life. I hope this helps. God Bless.

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Thank you so much for your response I think my biggest thing is because the doctor that she first seen in the hospital who did the biopsy said that it started in her left tonsil and had already spread to her lymph nodes so don't know how long she actually had it or how long or what the next step would be if it's spreading so that's the part that scares me I have been doing a lot of reading on different ways that this SSC type 3 Works some say it spread slowly some say once it hits your organs it's game over so I don't know again just waiting to see a doctor but first have to get the insurance are medical field has definitely changed back in the day you used to be able to go to the emergency room when you were in pain and they actually cared and did something not now soon as they know you don't have insurance for they're ready to send you home with some Tylenol 3.

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@blondiebabe1

Thank you so much for the kind words and jumping through this insurance Hoops is ridiculous one only one thing is holding me up to help her it is frustrating. Not to mention I am struggling with even though she is 41 she is hard to keep on track sometimes on the simplest task almost like her age is 41 but her brain is 12 and I'm sure that's part of her Mental Health I have just never known it to be to this degree so it seems as if the only one fighting for her life is me and to be brutally honest I am getting worn down by it like to the point if you're not going to fight why should I? Have you ever experienced that?

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Sadly No, I have a Family we're very close, but reach out to Groups, there are so many here, I can help you as much as I can just being there for you, but I'm honest, as why hide it, treatment is rough, can you handle it alone, if not call a Social Worker at your Hospital, mine was a God sent, till today, I feel so bad for you as well as her, so tomorrow a.m. call yes call a Social Worker, they will even help with getting her in to be seen..Make sure you see a Head & Neck Oncologist please....
Hugs ❤

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@blondiebabe1

Thank you so much for your response I think my biggest thing is because the doctor that she first seen in the hospital who did the biopsy said that it started in her left tonsil and had already spread to her lymph nodes so don't know how long she actually had it or how long or what the next step would be if it's spreading so that's the part that scares me I have been doing a lot of reading on different ways that this SSC type 3 Works some say it spread slowly some say once it hits your organs it's game over so I don't know again just waiting to see a doctor but first have to get the insurance are medical field has definitely changed back in the day you used to be able to go to the emergency room when you were in pain and they actually cared and did something not now soon as they know you don't have insurance for they're ready to send you home with some Tylenol 3.

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You have to insist, she needs help Now, or find another Hospital, this is sad, & I get so angry..
Again you need a Social Worker there Angel's, I'm going to call mine tomorrow, & see if she can steer you where to go, we're in NJ/NY area, excellent Hospitals..so you try at your end & I'll try for you at my end, you said your in San Antonio correct, may I ask what Hospital your dealing with ?
Hugs ❤

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@jbj

You have to insist, she needs help Now, or find another Hospital, this is sad, & I get so angry..
Again you need a Social Worker there Angel's, I'm going to call mine tomorrow, & see if she can steer you where to go, we're in NJ/NY area, excellent Hospitals..so you try at your end & I'll try for you at my end, you said your in San Antonio correct, may I ask what Hospital your dealing with ?
Hugs ❤

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I just moved her from San Antonio to my home. We live right outside of Huntsville Texas. I have found her a PCP doctor that would be in our town that would give the referral to a oncologist that is in Huntsville Texas is about 28 miles from where I live still a whole lot closer than going to MD Anderson all the way in the Woodlands two of my friends actually use this doctor and gave me all this information and they have beaten the cancer. My niece Leanna, had already been diagnosed and she had no support system where she was I still am unsure of her living conditions when she was there and San Antonio I do know that not much was done in the way of anyone helping her filing for her food stamps to get the Medicaid to get the type of insurance that's through Medicaid she did get a County insurance in San Antonio and after she was diagnosed about 4 weeks or so she stopped eating and slept for 5 days not eating not drinking her roommate took her to an emergency room that the county Insurance she had would pay for not the same hospital that diagnosed her and they did a CAT scan of her head and chest she said the only thing that they even addressed about her cancer was that it hadn't spread to her lungs they never mentioned anything else about it didn't offer her any type of care even though she could not swallow had not been eating they said she would need to see a ear nose and throat doctor or if she wanted them to admit her she had the consent to a feeding tube so she declined they sent her home with Tylenol 3. And we are attacking this aggressively right trying to get the insurance trying to like I have everything else lined up Dr Wise so that we can get started it's just getting this insurance so this week is going to be the biggest week just trying to advance the wheels so to speak.

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@jbj

You have to insist, she needs help Now, or find another Hospital, this is sad, & I get so angry..
Again you need a Social Worker there Angel's, I'm going to call mine tomorrow, & see if she can steer you where to go, we're in NJ/NY area, excellent Hospitals..so you try at your end & I'll try for you at my end, you said your in San Antonio correct, may I ask what Hospital your dealing with ?
Hugs ❤

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Thank you so much I will gladly take all the help I can get even if it's only a suggestion. So you mentioned getting a caseworker or a social worker how do I go about doing that? Is this something that's done at the hospital?

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@blondiebabe1

Thank you so much I will gladly take all the help I can get even if it's only a suggestion. So you mentioned getting a caseworker or a social worker how do I go about doing that? Is this something that's done at the hospital?

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Good Morning, yes my Social Worker was in my Hospital, every Hospital has one, hoping yours does, I mean they have alot of answer's, they know where to send you, they'll help with anything you need, even rides..call please, let me know...Hugs ❤

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@blondiebabe1

I just moved her from San Antonio to my home. We live right outside of Huntsville Texas. I have found her a PCP doctor that would be in our town that would give the referral to a oncologist that is in Huntsville Texas is about 28 miles from where I live still a whole lot closer than going to MD Anderson all the way in the Woodlands two of my friends actually use this doctor and gave me all this information and they have beaten the cancer. My niece Leanna, had already been diagnosed and she had no support system where she was I still am unsure of her living conditions when she was there and San Antonio I do know that not much was done in the way of anyone helping her filing for her food stamps to get the Medicaid to get the type of insurance that's through Medicaid she did get a County insurance in San Antonio and after she was diagnosed about 4 weeks or so she stopped eating and slept for 5 days not eating not drinking her roommate took her to an emergency room that the county Insurance she had would pay for not the same hospital that diagnosed her and they did a CAT scan of her head and chest she said the only thing that they even addressed about her cancer was that it hadn't spread to her lungs they never mentioned anything else about it didn't offer her any type of care even though she could not swallow had not been eating they said she would need to see a ear nose and throat doctor or if she wanted them to admit her she had the consent to a feeding tube so she declined they sent her home with Tylenol 3. And we are attacking this aggressively right trying to get the insurance trying to like I have everything else lined up Dr Wise so that we can get started it's just getting this insurance so this week is going to be the biggest week just trying to advance the wheels so to speak.

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I re read, if she can't eat, thats a problem, I couldn't eat, due to My Larynx Cancer, honestly I did refuse the feeding tube, ( if I were to do it over) I wouldn't refuse it, the majority of the people I met said its so easy, & the best thing they did, but I did drink alot of Protein Shakes ( Ensure) Smoothies, Cream Soups so as long as I got my proteins which is so very important I was good, did I loose weight absolutely, but noting to panick about..They should do a Pet Scan on her which is recommended to actually see her whole body, it shows everything even an Infection, plus the Stage of Cancer she's in, but again, every Hospital has there own Protocol, but definitely mention it,

Keep in touch hugs 🤗

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@blondiebabe1

Thank you so much for the kind words and jumping through this insurance Hoops is ridiculous one only one thing is holding me up to help her it is frustrating. Not to mention I am struggling with even though she is 41 she is hard to keep on track sometimes on the simplest task almost like her age is 41 but her brain is 12 and I'm sure that's part of her Mental Health I have just never known it to be to this degree so it seems as if the only one fighting for her life is me and to be brutally honest I am getting worn down by it like to the point if you're not going to fight why should I? Have you ever experienced that?

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I am 10 years out from Head and Neck SCC, with multiple surgeries for metastases. My husband also has cancer so I am caregiver as well as patient. The caregiver must keep herself healthy , including reducing mental stress, to keep from burning out. You cannot fix everything for her, and should accept that fact initially. You are going to help her, but you cannot do it all. Perhaps a therapist could help get her to understand the severity of her situation, so that she can take a bigger role in her own health care. Being strong and staying optimistic is important in dealing with cancer, so I hope you both can work as a team. Once you have a medical team, you won't feel so alone in this fight. Often a physician can get a referral started faster so I wonder if the diagnosing hospital would help to get things started in your area if requested. Sometimes an ER visit is needed to get the ball rolling for referral. If you have a referral center/teaching hospital nearby contacting their social workers might be helpful. The time frame is important, but more so if a highly aggressive cancer than one that is slow growing. I imagine you don't know anything about this tumor type yet. Good luck and be a vocal advocate for her health.

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I have a patient of T4aN1 Mx of age 67. Is there anyone who can help in letting me informed of any effective treatment modality? Risk factors, prognosis, and survival rate? I'll be much delighted for quicker and more urgent response.

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@sepdvm

I am 10 years out from Head and Neck SCC, with multiple surgeries for metastases. My husband also has cancer so I am caregiver as well as patient. The caregiver must keep herself healthy , including reducing mental stress, to keep from burning out. You cannot fix everything for her, and should accept that fact initially. You are going to help her, but you cannot do it all. Perhaps a therapist could help get her to understand the severity of her situation, so that she can take a bigger role in her own health care. Being strong and staying optimistic is important in dealing with cancer, so I hope you both can work as a team. Once you have a medical team, you won't feel so alone in this fight. Often a physician can get a referral started faster so I wonder if the diagnosing hospital would help to get things started in your area if requested. Sometimes an ER visit is needed to get the ball rolling for referral. If you have a referral center/teaching hospital nearby contacting their social workers might be helpful. The time frame is important, but more so if a highly aggressive cancer than one that is slow growing. I imagine you don't know anything about this tumor type yet. Good luck and be a vocal advocate for her health.

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I totally agree, my Social Worker at my Hospital helped tremendously, now we're in Group chats with her...as for being a Solo caregiver its rough, they have Respite, also the Social worker can steer her in the right direction..Hoping she gets the help..

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